Sunday, July 19, 2015

Noah received his Dymanic Movement
Orthoses (DMO) almost a month ago. It looks really small - makes him
look even smaller than he is when it's on. A compression suit with
specialized panels that are designed to give his body positive feedback
and encouragement not to move in certain ways (like scissoring his legs)
and strengthen weekend areas like his trunk and core. It only took
three weeks from the time of measurement to receive the suit from
London. We ordered the nude color, but now I'm kind of wishing I had
ordered a color so he could just hang out in it in public without
clothes over it, especially since Noah isn't able to regulate
temperature, he could easily overheat in it during summer months. And
it makes him look naked with it on. But knowing growth will require a
new suit in 6 months to a year, it's something I can always change next
time.

For the most part it was easier to get Noah into the suit
than I anticipated. Although it took me two days to stop having
difficulties not zippering his skin in the inside leg seams. Which I
feel terrible about. Noah, bless his heart was starting to grow fearful
of this suit anticipating that I was going to be pinching the inside of
his legs every time I put it on. The first day a child wears it 1
hour, the second day 2 hours, the 3rd day 4 hours and then thereafter 8
hours daily - or until bedtime. This is to measure pressure points
and see if any marks disappear within 30 minutes. Any marks that stay
longer than 30 minutes indicate a pressure problem that needs to be
resolved and fixed with the suit. Thankfully Noah didn't have any
significant marks that stayed for a long period of time. His is skin is
incredibly sensitive, but the suit seems to do well, although the 8
hour mark is his limit - typically for him 7 hours is about all his body
and skin can handle. And he doesn't appreciate it everyday, so I'd say
we're up to about 4 times weekly.

He seems to have his normal
range of movement while wearing it. He can still roll on the floor as
he normally would from room to room. I see him crossing his legs much
less with the panels build in and in fact am noticing on day two that
his left leg (the one typically the one most likely to scissor) is
remaining in a bent and upright position while laying supine. That's a
positive for sure. Noah of course can't sit independently with or
without the suit, but I can tell propped sitting (with holding one arm)
that there is a significant difference in the amount of work it takes
for me to hold him up and how he can center himself with the suit on as
opposed to off.

I'm also noticing potentially a difference in
his sensory gag (a bit early to tell yet) but I think it may be
improvement. Self-calming seems to be a benefit, as he appears more
relaxed in it. It could take a couple months for me to really know how
big of an impact it is having on his sensory challenges. As they come
and go frequently and different things set them off - mainly people he
feels are invading his personal space, or those he feels will approach
him for harm or to touch him. But he does have secondary sensory
challenges like touch, and sounds - even dogs barking can set him off.
And he hates the sensation of plastic or laying on plastic. Plastic
medical chuxs will make him throw up within seconds. And he cannot
handle the smells of his own bodily fluids and bowel movements. And
sometimes just when I think I've learned all the triggers Noah comes up
with something new that upsets him. He likes to keep me on my toes like
that. It's not easy, but I am so patient with him, as I can only
imagine how hard things are for him.

Overall I'm pleased with
the suit. And think it's made very nicely and has a huge potential for
Noah and children needing postural support. It's an expensive little
gadget, and thankfully it went through Medicaid easily as it is billed
under an Orthotic code, which are typically not denied. I'm thankful
for the small miracles that come my way with the mounting battles that I
have to deal with when it comes to Noah's Medicaid benefits. However, I
know of a family in the UK that was recently denied their DMO suit, so
it's not easy everywhere. I wish it was. There shouldn't be a child
anywhere that gets denied their medical, equipment and therapy needs.
There is just never enough help for all that is involved with parenting a
severely disabled child. The costs when I think about them make me
sick to my stomach, and make tears well in my eyes because I worry about
how I'm going to figure out a way to help Noah with all that he needs
with what little we have all the time.

Originally I had thought
maybe this was a suit that could be passed onto another child when he
outgrows it, but that isn't the case with DMO suits, they are so
specialized and have so many specific measurements that you'd have to be
Noah's twin likely for that to work. I'm hopeful that this will offer
Noah more support in his daily activities. At least he doesn't object
to it, so that's a huge step.

If you want to know where your heart is, look where your mind goes when it wanders.Love,

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Noah

Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Today, Noah has the diagnosis of hypoxic-ischemic encephalopathy resulting in spastic quadriplegia cerebral palsy with athetoid movements. Noah's miracle has brought our story to all of you.